Thursday, June 25, 2009

Were we really meant to have kids with special needs?

The other day, Live to Love and Laugh (sorry, I only know your screen name!) wrote, in response to my post about Max running over my begonias, "God only gives 'special' children to special parents He knows will love them. He trusts you!"

This is something I heard a fair amount of times after Max was born. That and, "Ellen, if anyone can handle this, you can." I was both despondent and angry that my baby had a stroke, and felt that people were saying these things just to make me feel better. Eventually, I started having raging debates inside my head on the topic. They went something like this:

Me: I'm a person who's always loved children. Why am I the one who ends up with a child who will probably have significant disabilities?Me: That's right—I love children. I will love this child no matter what. He needs me. And I have lots and lots of experience with kids. Maybe this is why I got a child who is going to have special needs.Me: But I am not a person with vast amounts of patience. I am, however, a person who likes to control things. This situation is out of my control. Nothing makes sense. I am not cut out to do this.Me: OMG, he is so delicious. I don't care about why this happened. I am just going to focus on helping him however I can.Me: Why did this happen?

And so on and so on.

As I got to know more parents of kids with special needs, I was not convinced that all of them were meant to have their children. As "Anonymous" said in her comment on the begonias post:

"Having 18 years experience as a parent of special needs children, I respectfully have to disagree with the statement that God only gives special children to special parents who will love them. I wish it was true, just as we all wish ALL children were given just to parents that will love them. I've seen many special needs children who are neglected or you can not get their parents involved or even attending IEP meetings. Children go further with involved parents! I know of many people with disabilities that have appointed guardians because their parent stole what little funds they got monthly, from them. Sometimes I think special children should be given to smart parents. Then we could figure out all the medical terminology or abbreviations thrown at us, work with the professionals and always know what is best for our child!"

Here's where I stand: I am a good mom to Max. That much, I know. But I do not feel that I am special, in particular. I know so many amazing moms. I believe I was meant to have my Max whether or not he was destined to have disabilities.

I have a feeling a lot of you have thought about this topic. Share your thoughts?

31 comments:

As a person who is not affiliated to any religion, I have a hard time believing that God chose me anyway. I agree that I have also seen people who have difficulties with the extra demands. But then again, so do I at times. No, I don't think that you do get chosen. And I absolutely hate the "special children for special parents" thing.

I personally am not a huge fan of the "God gives special children to special people" line. Nor am I fond of the "God never gives us more than we can handle" line. I mean, look at Job-- he sure got a bum deal!

I've seen too many children, those with special needs or not, whose parents are woefully unprepared to deal with the consequences of having any child-- let alone a child with special needs-- to think that God is up there playing some sort of "people with higher qualities Bingo" with our lives. Nor do I think that I was born with the something "extra" he was looking for so I could be "chosen" to parent my child.

At the same time I do believe in God and I think that he's there to support those of us in this situation. I just don't think that he's deliberately made a child suffer just so that he could prove a point with me and thousands of other parents unless that whole thing with Job was some sort of a, I don't know, running bet or something. Things get especially murky when you talk about those who parent children by circumstances such as adoption, guardianship, foster care, etc. because then it suggests that God somehow planned the whole thing out-- the death of the birthparents, abuse of the child, etc etc just so that the parent and child would "find" each other. Sounds like an argument for no free will to me.

Um, yeah. You can see this bothers me. I used to get really, really angry when people said that sort of thing to me, but now I realize that it's one of those general platitudes that have become so ingrained into society that people think of them as "the appropriate thing to say" to someone in a situation like ours; ie. parenting a child with special needs. Maybe it does provide some people with comfort-- I just don't happen to be one of them.

I am so with you on that debate in my head. Although I really don't have debates anymore and just accept that it is what it is. Who knows why. Maybe to teach me patience and how to give up control. But that seems like a punishment to her just to teach me some lessons. But I do believe that I got exactly the kids I was supposed to have, exactly when I was meant to have them. I don't find any comfort in that statement. Same as I don't find much comfort in people telling me that they understand when I know they don't, or that everything will be fine when we're anticipating a major surgery. I don't think I'm particularly special, but I do know that Addison has made my life so much richer.

Wow, I just love your discussion topics Ellen. They are so thought provoking. I don't particularly think there was a divine plan to put Regan and I together. That being said, I know she is a phenomonal kid because of the postive attitude, and hope we have ingrained in her.

What could have been a situation of quiet acceptance and muddling through life has become "The Little Engine that could"

I thank God for givig Regan to me because she is such a tremendous gift and blessing....but as to how she and I came to be as mother and daughter...just luck, and my incompetant cervix, lol

I hate these comments. I'm really just not at a place where I can accept that things "happen for a reason," which is something I'm not sure I believe. I do believe that I will do the best for ALL my kids with what I've been given. Even though I hate comments like this (which I get all the time anyway - it's the same as the "twins to only those than can handle it, blah blah blah") I realize that the intention is overall good, they want to say something comforting to you, but at the same time, I really believe that they want comfort from this happening to them. Even if I don't find it comforting, I know people really want to pay me a compliment and help, while comforting themselves, maybe.

Maybe Max chose you? Maybe him and Sabrina chose you and your huspand in Heaven to be their parents. We don't know why we were given "our children". But why doesn't matter...what matters is that we love them and take the best care we can of them. Shoot I love Max and Sabrina and they aren't even my kids :-) I love that new picture of him too...

I've read your blog and a few of the others for awhile. My daughter has Polymicrogyria and spastic Hemiplegia. I was a strong believer in the two phrases "God gives special children to special people, and never giving us more than we can handle".... before my daughter's diagnosis. Now I hate it. It must be comforting to the people who say, because they have nothing else to say.

The story of Job has really hit home to me. About 6 years ago I really struggled with my faith. I felt I had lost a lot and it was the book of Job and the song "Blessed Be Your Name" that brought me out of the depression. I decided that if I ever had a daughter I would name her Keziah (After Job lost everything and God restored him to health, wealth, and Children... Keziah was one of the names of his new daughters). I wanted to name my daughter Keziah to remember that God was always there no matter how terrible life felt. After Keziah was born we stuck with that name and she seemed like such a little blessing (and she is). My son has Periodic Fever Syndrome and we were in and out of the hospital with him all the time. I felt blessed and that God had given me this sweet healthy babe even though Jared was sick. At 4.5 months we started realizing something wasn't 'right' with her and continued in the process of getting the diagnosis. My faith was seemingly shattered, but I'm not trying to remember that God is there when life sucks and there is pain. He'll bring us through somehow... hopefully I'll look back and remember how He carried me through the pain. Love you all! Courtney

Other things I hate -- "there is a special place in heaven for you" and "I don't know how you do it" . The second one really bugs me because the person ASSUMES we are. I guess to assume other wise means that they would have to ask what they could do to help.

Having a son with autism has had a great effect on my faith - both good and bad. ASD and cleft lip/palate issues aren't glamorous. They are hard work and lots of time off work. They are on-going. I have been told that I make it look like everything is fine.

For the most part, I have always been a low-matainence person. I wonder if that is what needs to change?!

It always bugs me when people try and make me seem better than I really am. I am only going the things I do for Evan because I have to, I would rather not have to do them. I could have lived a happy and full life with out being the mom of a child with special needs. I would not have chosen this life but now that I have it I am making the best of it, which is what the majority of people would do.

I wasn't meant to have ANY children! Sheer dumb luck on my end! I was happily and deliberately childless, and then, my oldest (who started out his young life as a nephew) was in a situation where he desperately needed a family and we were the only ones willing to step up to the plate--otherwise, it would have been foster care hell for him, and we weren't having that.

Then, I got "knocked up!" Birth control failure in a big, big way!

If there's any divine plan in all that, I'd have to say that The Big Invisible Cheese Up in The Sky is probably more disorganized than I am--which makes me believe that sometimes, s#!+ just happens!

It's all working out, though--we have had some horrible tough spots, struggles and sadness, but we are building a fine little life that prioritizes fun and family. It could be a lot worse than it is.

My kids aren't ever going to be the smartest kids in the school or the best athletes, they aren't terribly clever, wise or "pithy," but they will probably excel in nonconformity, and that's just fine with me! And I will never be the mother of the year (I couldn't pass the Housekeeping Trials), but I don't want to be--give that prize to someone who needs it to feel important!

Thanks Ellen and everyone for the great dialogue. I've given it a lot of thought since I posted my feelings about this issue. I do believe that many people don't know what to say. I know I originally became very irked when people would always tell me "double trouble" or "which is the good one". I would sneer out "twice blessed" because my sons were alive after being born at 2 lbs. 4 oz. and 1 lb. 9 oz. Time has passed and I know now that people just didn't know. However, maybe its good to learn because it can be very painful to someone going thru a difficult time. I've also thought lately how great it is to have blogs to meet and share, I sure could have used it 18 years ago when I was home with two tiny babies and VERY scared.

I don't have a child with special needs, so I'm not sure how much my opinion on the subject will matter to you all. But I don't believe that at all. Clearly there are parents of special needs kids who are apathetic, neglectful, and even abusive. And clearly people do get more than they can handle. People break down or commit suicide every single day. I believe in God, but I don't believe in the things written about him in the bible. In the bible, he kills almost every human on the planet in a flood, burns his people for eternity if they don't behave, and tortures Job over a bet. Why would I worship someone who does that?

So my faith in God comes instead from my relationship with him. I pray, we talk, and I believe I feel his presence in the world. I see God as a parent. A really, really good parent. Not the kind of a parent would intentionally afflict one of their children with a disability or disease. (If God does that, I am NOT going to worship him!) But a parent who loves their kids even when they do the wrong thing, who comforts their children when times are tough, and who tries to help their kids when they're overwhelmed and have lost hope.

Long story, short, I believe that God doesn't arrange disabilities or families or where I park my car at Wal-mart. But I think he loves us and he's there for us all as we try to make our way through the world as it is.

I tend to roll my eyes visibly when people tell me the standard line - "only to those who can handle it" - and say with all seriousness than he must have mixed me up with someone else! Serves them right for saying such a weird thing.

We just handle it. We just do, because we love our child(ren) and can't bear not to handle it. And, many people who don't think they could do it would just manage the way the rest of us are and find the strength to live life, to continue to laugh, and to continue to believe in God. We fall in love with our kids more than we ever imagined we would. We celebrate all their triumphs, no matter how small they may seem to others, and because they inspire us.

The comments we can do without. When I see them coming, I hedge them off by saying and don't even say "cliche here" ... and then move on as those conversations are not in the least bit interesting to me!

Our doctor told us; "It's just random chaos, honestly you just got the short end of the stick. It happens and it's unfortunate it happened to you are your son. There is no rhyme or reason". So true. It sounded harsh because I don't believe my son is a "short stick" although it is true that it SUCKED he had a stroke, and that life is unpredictable.

I do however find that Jude is a blessing, and has taught me more than I ever expected to know. So maybe in some way special children are given to those that will appreciate them, then again maybe not. Who knows the rhyme or reason to life.

Thought about this question all day. Do I think that God selects special mommies? No. Absolutely not. Do I think that people get put in crappy situation and rise to the occasion? Yes. Completely. And a lot don't. I was a special ed teacher for five years so I know first-hand the difference beteween children with involved parents and those without. That's what motivates me every day.

I don't mind when people say, "if anyone can handle this, you can" because i feel so extremely blessed that my husband and I are able to do as much for Charlie as we can. I know many, many people who aren't in a position to shell out the dough and attention like Hubs and I are.

I also-gasp-don't think that God gives us more than we can handle, but he might give us more than we can handle ALONE. We can only do it if we reach out and ask for the help we need, which can be very difficult some time.

All anyone really has to do to prove that God has not handpicked any of us for our strength of character and fortitude of soul is to look at the multitudes of children that are given up for adoption everyday because they were born with special needs. Babies born to parents not "special" enough themselves to handle what God had given them.

I agree with a lot of the above comments. Soon after Alice's diagnosis, I asked a family friend how she made sense of her son’s brain tumor being a devout Catholic. I asked her outright how she felt when people said things like, “This is how God meant for it to be”, or “God has a plan”. I looked up her response because it really hit me:

“I'm sure I blamed God for doing this to us or to Jeremy, as I matured, it became clear to me that the God, I know doesn't as much do this to us as He is there to guide and strengthen us to deal with circumstances that life happens to throw our way.”

She talked about how she felt that God put specific people in her life to help her on this journey, and I think that is what I identified with most. I am not religious, but I do feel that there is something beyond myself and a certain rhythm to the universe. I couldn’t do this without the support of my husband and family. I know that certain people and opportunities have crossed our paths for a reason in the past two years, and Alice has benefited because of it.

People don’t know how to make sense of something like having a child born with a disability. Seeing parents of healthy children who take so much for granted is like salt on the wound. Why would those parents be deserving of healthy children and not us? Everyone has their own way of accepting things in life that don’t make sense, and some people forget that not everyone shares the same beliefs.

I know my daughter could have done a lot worse in the mom department, but I've never felt like I was special or chosen by God or anything.

I still don't know how to respond when someone suggests that God chose me. Or when someone says, "I could never do what you do." Of course they could! You love your kid, you do what you have to do, special needs or not.

I've also raised two neurotypical kids and that wasn't always a Swiss picnic either. But no one ever suggested I was specially chosen by God to raise my other two.

It actually gets me unnerved for people to say this. I don't think I am particularly suited to be my son's mother...I wasn't even sure I wanted to be a mother (x3). I research a lot, I drive others hard to get the answers I need...maybe that's my "qualification". But...in the end, I don't know why I was chosen to be his parent. More importantly, I don't know why HE was chosen to have his challenges. I'm still stuck in "it's not fair", and yet, it is what it is.

Since I frequently feel totally inadequate at dealing with the challenges Teddy faces, I've resented the "special kids for special parents" comment too. Let me tell you, if anyone had seen us this morning at the zoo they wouldn't think we were handling special needs well. My husband & I decided not to go anywhere or do anything for the rest of the summer after that mess.Oh yeah, & "I don't know how you handle it!" really means "Thank God I don't have to deal with that!"

I do remember thinking, prior to having a sn child myself, about my sister-in-law with an sn child, and I would often think (not out loud, thankfully) "How does she DO it? I could never handle anything like that! She is so strong." Fast forward a couple of years, and here I am with a sn child, along the learning curve of having a child with special needs.

I have such similar debates with myself. No, I don't think there is some higher being that likes to thrust children with special needs on unsuspecting parents because they have an inner strength unbeknownst to them. I do however, often feel a curiosity (sometimes mixed with fear/hope/rage) at the trajectory my life has taken. And with wonderment at the things that used to be important or meaningful to me before vs. today.

Another comment that I get is something along the lines of "you sacrifice so much for your child" as if I somehow have a choice or implying that I am Mother Theresa or something. Truth be told, while I love my child and do want to help her, there is a selfish element as well. I want MY life to be better, and any improvement in her quality of life impacts my life.

I definitely DON'T feel like I'm a "special" parent and I inwardly I grown when I heard that said to/about me. I don't feel I'm any more 'special' then the next mom, there is nothing more special about me that would have God thinking to give me a 'special' child. While I do believe in God and that he created Kayla I don't necessarily that she was created for us specifically with special needs, or Ds. I just believe she is the child that was created between Joe and I and she doesn't have Ds because we are 'special' parents. Am I making any sense?! LOL

Wow, what a debate you have going on here. I am new to your blog. Actually I found you through Big Blueberry Eyes and wanted to ask you if I could re-post your Bill of rights with your permission and reference.

Anway, on this subject. I have a daughter with Down sundrome and my opinion on the comments are that they are meant to be comforting so they don't anger me... annoy me, yes indeed, but they don't make me angry. I do have to say that the phrase that is constantly thrown around that God doesn't give you more than you can handle is not biblical.

As for the predestination part. I just don't know and I don't try to. There is so much that I don't understand, so I focus on what I can understand. My heart is in making life as good as possible for my daughter and other kids with special needs.

I just gave a workshop at a Parent support conference about how to start a Special Needs ministry. I have a several scriptural references on what God is calling us to do with people with special needs.

My daughter has changed my life and I do feel that God gave her to me. My husband said before she was born that "1 in 800 kids are born with DS, and God gave us one of these gifts to care for". I have spent many days on my knees in fear, inadequacy, overwhelming, etc. But I have also spent so many days in grateful thanks for having my baby girl in my life. Great topic.

I heard those words "God gives special children to special parents" in the hospital when my daughter who has Down syndrome was born.I hate hearing that!If it were true then why are so many special needs babies aborted or neglected?If those parents were special they would have kept that child or cared for that child.I think God makes the CHILD special not the parents and we can learn alot from them if we will.

I agree with many of the commenters - people offer those cliches because they just don't know what else to say. And maybe if I didn't live this every single day I wouldn't know what to say either.

Warning, I am about to get preachy...

I believe in the God of the Bible. The Bible says He knit us together in our mother's wombs and that we are fearfully and wonderfully made (Psalm 139: 13-16). Do I believe that some kids got "messed up" and that is why they have special needs? No. I believe my daughter and other kids like her have been created exactly the way that God intended them to be. Do I understand why? No. But I do trust that God will give me the strength to get through each day and He will comfort me when I feel like I cannot go on(and that comfort may come from other parents who are in the same shoes).

I certainly don't have all the answers, but God does. I read the book of Job when I was pregnant. After my daughter was born and I felt like my world was crashing down around me, it really ministered to me. With all that happened to Job, he never turned on God. He asked "why me?", but he never stopped believing in God. And in the end of the book when God speaks to Job, He never offers an explanation about why thingsd happened. He simply reminds Job of who He is, God - the Creator and Sustainer of all things.

So we may never have the answer to the question of "why us", but I take comfort in knowing that God is in control and I didn't get a special needs child because of chance, or dumb luck or a short stick.

My brother Jacob was born 37 years ago on January 31st. I was eleven. Jacob was DX extremely mentally retarded just before his first birthday. I am forwarding your blog to my parents. I am forwarding this particular post because 1.) My mother has uttered these same words and 2.) June 25th is her bday.This video is about Jacob. I hope it encourages you.http://www.youtube.com/watch?v=LPA01PHeuDo

I am not special and God does put more on us than we can handle. God is special, he is the strength and love in me, not me. He gave me more than I could handle so that I could learn who is really in control. My children are exactly who God created them to be, in his very own image He created ALL of us, even me. I hear these sayings all the time from clueless people and sometimes I have the time and energy to reply to them from my heart in an admonishing way and other times, I just smile and nod and walk away. I have learned that no matter what I face or my children face He is there with us every step of the way. He never said my way would be easy, he just said I would never walk it alone. In my weakness he is strong.